Published on 12, July, 2020
I’m autistic, and I’ve been dealing with depression and social anxiety for over a decade, now. My family has been battling the NHS to get the little support I have now. I am wondering how other autistic people are finding the NHS.
My first issue is that there are no autistic professionals accessible to me, which means I’m having to try and educate every professional I encounter on autism. I’ve been struggling to properly understand what autism is, myself, so I haven’t been doing great. I’m thankful to have an Adult Autism Intensive Support Team that operates in my area, because they have now taken up the role of educating NHS professionals on autism, but that means I’m now having to hope these other human beings internalise what is said to them, view me as equal, and treat my problems as equally as serious as a non-autistic person’s problems, which has happened rarely so far, it feels.
My second issue is the interactions with the professionals who do not care that I am autistic. Having a psychiatric doctor laugh when I told him I was autistic, asking me if it was something I had read on the internet. Having an occupational therapist try asking me to separate myself from my autism. Medication being the solution, for the time being, while I waste years of my life terrified of the world around me. I wonder what else there is that I’ve forgotten to mention. I should document the things that make me feel miserable.
If I were a caged animal, I’d have somebody in my corner. Somebody would scream “This is neglect!” Unfortunately, I’m an autistic human, so I don’t really have that. I have a team of NHS employees in my corner, who aren’t willing to bite the hand that feeds them, verbally, of course. Who would be willing to criticise the one that pays them, that gives them what they need to make it to the next day? I’m trapped, because they’re trapped. I’m losing hope. I have no faith in the NHS, or in British society to force our political leaders, those whose jobs it is to serve the people of our nation, to come to the aid of any autistic person.
In short: I have no faith in the NHS’ ability to help autistic people. How about you?
I'm so sorry you have had those negative experiences, and unfortunately I'm not going to be able to give any advice, although I wish I could. I lost faith in the NHS years ago, before I even knew I was autistic, so I fully empathise.
I have read that neurotypical people have a "belief web" and that they think in lockstep. This means that new ideas and new ways of doing things can take years to be accepted and implemented. This is a trait of the neurotypical mind, in the same way that we have difficulties dealing with some things because of how our minds work.
I don't know what the answer is, but I think that autism is still seen as pretty rare, and health professionals are not properly trained to understand it. I believe that there are many, many undiagnosed autistic people struggling to get through life, like I was for over 5 decades - but a lot more adults seem to be being diagnosed now, so hopefully as our demographic grows they will have to start accepting and supporting us. I have tried to educate people I work with, and none of them have made me feel stupid or have invalidated me. It's a slow process, but there is hope. You are not alone.
Thank you for your input.
I wonder if this neurotypical belief system can be taken advantage of, if we can force them to take the first step, somehow, and if that means that they will continue to take steps, after the first step has been taken. I wonder, but I have no idea what would be the starting point for figuring this out.
Seeing that anyone has replied to this has already made me feel less alone. I am finally interacting with people who understand. It’s amazing.
I'm glad to hear that you feel less alone. For me, when I needed help this forum was worth more than a whole roomful of NHS therapists. The people here "get" you. Although there must be some exceptions, many health professionals won't.